I woke early, didn’t turn any of the lights on, managed to go to the bathroom, and start my coffee before Owen woke. I was hoping he would keep sleeping so I would have a couple of hours to just sit, but instead, it was time to start our day. He woke probably because I was not being as quiet as I thought I was, but every noise is a noise to him. We sat in the dark for a while though. Him in my arms, hugging my neck, trying to bite my hair. It’s a sensory thing for him. He does this a lot. Although this is one of those things that has kind of circled around. He stopped doing it as much, but I think with the anxiousness of our days he is wanting more sensory input. And that followed us through our day. He wanted me to do compressions for him on his joints and a lot of big hugs. Those also give him the input he was needing for his body. I sneezed and I told him to say “bless you”. He said “bless ewe” and then did the best fake sneeze rendition I have ever heard, followed by telling himself bless you. In general, we had a pretty good day with some rough around the edges moments. I was exhausted, but he does not appreciate the excitement of during the day sleeping and he truly doesn’t appreciate the during the night sleeping either. But tonight’s one of those rare nights that he was asleep before nine o’clock. And before I could even start talking about bedtime Owen told me, “set the timer and wait till it go off for baff”. The connections were huge today and his words were abundant. I always use a timer with him so he knows when things are happening. He has started learning about the clock and can read the time but doesn’t understand what it means yet. Through sadness, I watched as my sweet baby O bowled on one of his apps. It made me miss our routine even more for him. He asked all day for school and his teacher, but every time I tried to do his work with him he got upset and ran into the other room. One day at a time I remind myself. I’ve been adapting his work to show him similar activities and that seems to be helping. I could tell he needed the feeling of security today and came to me a lot for hugs. I told him I loved him every chance I got. Through these challenging days, I’m appreciating life even more. Owen’s my ray of sunshine and my miracle that keeps me going. Never give up. Know that this is one moment in time and tomorrow is a brand new day. Smiles to all and donut daze!
I’ve smiled a lot today. In fact, I’ve smiled more today than I’ve smiled in a long time. And I can say I woke up cranky so it was not how I thought my day was going to go. Last night I stayed up way too late working on numerous projects. The days feel long and nights go quick. I want those few hours of quiet to sit and wind down from the day, but they always feel like there is something to do. Owen woke full of words and energy, asking for “box”. He wants a computer tower instead of a laptop. He will keep this on his mind for the days to come. I showed him how to work the mouse on the laptop and today he got it out on his own and started using it. He likes to turn it on and off, but he was also going to the notepad and typing out his numbers, letters, and words that we go through. He played a lot of music today, especially on his keyboard. He was playing some of the prerecorded tunes and then dancing around and singing. The singing was truly the best part. He’s my future little songwriter. He doesn’t always like it when I video him so I hope this is one of those memories that will last my lifetime. He truly has an incredible tone and rhythm. He started singing, “open notepad 12 123” keeping with the rhythm and then adding more words about the computer and his day. He sang and danced for over an hour. I’m still smiling as I think about his calculated moves and his hand up in the air as he watched how it moved. He doesn’t always make the connection to his body and movements so he is still very fascinated to watch what his body does. I often wonder if him watching how he moves helps confirm the motions to himself. I remember as a toddler he would take my finger and make me do the selection, like his finger wasn’t capable or he needed the confirmation that it could be done. I didn’t quite grasp how much his sensory needs would come into play as well. I know tonight I will fall asleep with a song in my heart, a smile plastered to my face, and the dreams of another great day for my sweet baby O. Find your inspiration and motivation and be the change you want to see in the world. Smiles to all and donut daze!
I watched Owen once again only kinda, sorta dry his hands on the towel. And it dawned on me, finally dawned on me that this was a sensory thing. I don’t know why it didn’t occur to me sooner, but here it was as plain day. I can only imagine the sensory overload in the bathroom alone. The drip drip drip of the water hitting the edge of the sink, the toilet noises, the shower, everything makes noises and sometimes I can tell it bothers him more than other times. “Wanna vacuum”, he said. I knew full well Owen did not want to vacuum, but he did want me to turn it on so he could scream about it being on. He loves watching vacuum reviews on YouTube and even reciting them, but not the actual vacuum. “All done”, he yells when the vacuum is on, sometimes kicking it or fumbling for the switch to turn it off in mid-push. I ripped a fingernail and I before I even thought about it I started touching it with my other finger, clicking it as I was trying to fix it and this was enough for Owen’s foot to start tapping. I realized what I was doing. This is something that shouldn’t be done. The clicking noise I was creating by trying to smooth out my nail was too much for Owen. His foot tapping was quickly going to escalate if I didn’t stop. Last night he was upset for two hours because I didn’t have my glasses on in bed. I never fall asleep with my glasses on but last night it sent him into a meltdown. He kept repeating about my “summer glasses”, all glasses are called summer glasses. These two hours got us to midnight. He had fallen asleep earlier and then woke up screaming about my glasses and the “box”. He wants to have a computer tower like he uses at grandma’s house instead of our laptop. He woke up this morning with the request for the box and my glasses still on his mind. Wondering what rule I am about to break keeps my mind spinning some days trying to stay ahead of the curveballs he throws at me. He listened better today than he does a lot of days and we were able to accomplish our goals. Never give up on the possibilities. There are miracles that happen around us every day. Find your strength, rejoice your progress, and celebrate even the tiniest of victories. Smiles to all and donut daze!
Today’s one of those one breath at a time kinda days. Nothing really went wrong but nothing went smoothly either and Owen probably listened better than most days so I should turn that frown upside down. Owen repeats his words a lot, a lot a lot. And the anxiousness and sadness he has been experiencing with no routine has caused it to increase. He will ask me the same question or state the exact same words hundreds of times in a day. Sometimes it feels like a hundred times in a few minutes. It’s possible really. Distraction is about the only thing I can do to get him off a subject and right now the subject is mostly school-related. He misses his routine and who doesn’t miss their favorite things. When he asks me a question I will answer it a couple of times and then he builds on the question and asks something else. He will add the phrase, “and den” wanting me to continue explaining what’s going to happen. Now when he says it I say, “then I will love you forever”. Today he went through the whole conversation by himself. He asked the questions, gave the responses, and then the “and den” was answered by my sweet baby O. He said it. He said, “den I will love ewe forever”. My eyes filled with a few tears that couldn’t spill over because the would start a whole process with Owen, but I always get so excited when he talks about emotions or he says I love you. It takes repetitive actions and words for him to learn something. It can be months of repeating the exact same behavior until he gets it. I tell him I love him all the time. I explain to him that I get emotional and I want him to know that is part of life. I even explain what emotions are. My emotions will quickly send him into a meltdown if I’m not careful in how I express myself. My tears will bring hysterical laughter from Owen because he doesn’t understand how to process it if my tears alone don’t cause a meltdown. But today through all my emotions and his, he remained pretty calm, of course until the bedtime routine and then he became a bucking bronco in a china shop eating pizza while carrying on twenty-five conversations about socks that don’t match. The fake snoring quickly, if two hours later is quick, turned into real snoring and he said, “fall asleep with music” still wide awake argh that point for another hour. . Life isn’t always easy to explain, but the love sure is. Dream of the possibilities, focus on the positive side of life, and the rest will follow. Smiles to all and donut daze!
Keeping my child busy is a full-time job. He has toys and tablets and television and music instruments and sensory toys and and and I walk to the bathroom to wash the paint from my hands from our art project and he followed me screaming. He wanted me to find something on the TV, but he couldn’t tell me what it was. He kept repeating what was on the channel already. Distraction was the next choice, but that was why I was washing my hands. We had been working on painting some of our backgrounds because once again potty training seemed to be completely forgotten and I was trying to distract him from that. Now I sit here in the quiet of the night, breathing through the moments of our day. His words echoed so many of our conversations gone by. “Patience patience patience”, he said to me as I was trying to fix one of his toys. I didn’t think I was losing patience with it, but I guess he thought I was. I will tell him all the time he has to have patience with mommy and give me time to do something, as he screams at me wanting whatever the task I am doing done immediately. I used to say to him, “patience little one” and he would randomly say that phrase back to me. It brings a big smile to my face thinking about how far he’s come. His words seemed more abundant and we worked on his spelling throughout the day. I love how he thinks through words and makes connections. He takes thinks very literal so when he breaks down words and their meanings I feel like he is making big strides. He said, “notepad note notes are music”. We work on the computer and I will open up the Notepad for him to type his words in. He can spell about ten words without help, but it’s when he wants to do it and on his terms. There were many hills to climb and valleys to walk through today, but the smiles, the laughter, and the learning moments for both of us are what I am focusing on. This is a very emotional journey, to begin with, because I want to give my son the world but right now we add a pandemic into the mix and the world isn’t there to give him right now. We stay home when all he wants to do is his routine that gives him comfort. One day at a time, one moment at a time, and we keep praying for the world to change. I look at how far Owen has come and I know to never give up hope. Believe in change, strive to make a difference, and know that you matter. Smiles to all and donut daze!
“What’s your favorite color”, I asked Owen repeatedly. I’ve asked that question for years. He’s never answered, but I know he will one day. His likes, wants, and needs are all things I want him to be able to share with me. Owen will sing certain parts of songs to express his feelings. Many years ago he was sick. He started singing, “momma called de doctor and de doctor said”. I was never so happy for those jumping monkeys and their song, but I hated that my baby was sick. I told the doctor I rejoiced with his connection to the song. And then I cried because how could I possibly be happy when he was sick. But this was a big moment for him. He was able to at least express that he wasn’t feeling well. Years later I still ask him to tell momma when he’s sick or not feeling well and he sings the song. I think about the things I don’t even want to think about. My sensory child doesn’t understand how to throw up away from himself. He will lay down and doesn’t understand any of the ramifications of what is happening with his body or why he shouldn’t lay his head down. He goes through times where his need for sensory input is greater and other times the world is overwhelming to his body. Owen will put on a long sleeve shirt without really thinking about it. His arms are completely covered already by the long sleeves, but it takes him five minutes to put his arms into a coat. Any coat, it doesn’t matter, winter, rain, fleece-lined. He sees me get his coat and his arms become like pipes that won’t bend except around his own body. He puts his arms in very hesitantly, almost like it pains him, but he already has long sleeves on. The weight of the jacket doesn’t matter it all seems to cause the same reaction. Today he did well in general, but did not want me to do anything besides pay attention to him so I sat a lot more than I wanted to. The emotional journey was mine to be had. I cried a lot and that made Owen laugh. He also hugged me and that made me happy, but I cried still. How hard this feels for me is only magnified by the fact that I can’t even begin to explain it all to Owen. It was another night of hours before he fell asleep and for me, I was fighting with every ounce of my body to stay awake until he did. I’m counting my blessings. His smiles were huge, he mostly listened, and he even did activities with me. We grow, we learn, and we love, that’s the easy part. Today is the first day of the rest of your life. Make today matter. Smiles to all and donut daze!
The talk of the town is “school’s over”. Well, it’s the talk of our little world at least. The anxiousness Owen has been dealing with is causing him to repeat words and scenarios over and over and over and some more over again. It’s constant. He has done this over the years, but now it’s daily and for hours at a time. Distracting him takes all of my efforts and energy. I rapid-fire questions to him, hoping one of them will be what changes his focus, but this is how he processes things. At night when I lay down with him, I pray that my leg stretching out or me moving in any way won’t start the process again. He flings his head up and down on his pillow, seeking a sensory input I can’t give him. We work on joint compressions, feet massages, and breathing techniques, but I think they all work quicker on me. He pounds on the bed so much I’m waiting for it to break through. Heck, I’m waiting to fall to the basement with some of his moves. If I don’t respond they get more powerful. If I do respond he yells about it or starts crying. There are answers and solutions to all of this, but it’s not something that Owen easily moves on from. It takes my repetitive actions before it gets him to stop. We laughed a lot, sang songs, he did great with going to the bathroom on his own, and he played games with me. We painted together working on his fine motor skills and he even did it with very little prompting from me. This is what I hold on to and know we made it through our day with some fun. And lots of coffee for me. I know I’ve talked a lot about coffee around him when he says to me “you need more coffee”. I laugh and tell him yes I do. He fell asleep in under two hours today. That feels like a victory. I sit here at ten o’clock at night in the quiet of the house, drinking coffee, eating pretzels, and praying that my sweet baby O has peace tomorrow throughout our day. Treasure the smiles, celebrate even the smallest of victories, and find your inspiration to grow even in the middle of chaos. Smiles to all and donut daze!
Many smiles and giggles, and laughs, but the crying screams, those get me. The days are long, the nights are short, and my thoughts are tired. My boy is sad. Owen repeated the words “stay home” for almost two hours before he fell asleep. I guess I’ve said it one too many times. I felt like I was listening to an advisory board of what we should be doing, stay home, stay home, stay home. I’ve tried to explain it to him in words that will help him, but my terms are not explaining the magnitude of what’s going on and why we are doing what we are doing. He doesn’t like to look at pictures or storyboards right away, so explaining it to him with pictures takes him a while to grasp. I’ve had a dry erase calendar out for him for months, explaining what his schedule was and where he was going. Until a few weeks ago he wanted nothing to do with it. He would wipe off the days with his hand as he walked by it. We would talk about it every few days but his foot would slam the ground, hands to his ears, and scream if I tried to explain anything about it. When the quarantine first began he started looking at it more. His teacher had sent home papers about the days of the week and that seemed to finally put everything in perspective to him. Then it was fine for him to use the calendar. As time wears on he hasn’t wanted to look at the calendar again. Nothing is on it. But I still check off the days for him. Insert big breath here. His concerns for how I look have been the main focus again. I have to wear the right clothes at the right times. There are home clothes and going out clothes. These rules were set in place before I realized they were rules. I would change into comfy clothes when we came home, that’s all it took. I remember one night I was holding him and he wet through our clothes. I had to change us both. I didn’t think about it, I just changed. Hours later he finally calmed down after I put the right combination of clothes on. He doesn’t want me to take off my “summer glasses”, all glasses are summer glasses and I can’t pull back my hair, although we are working through that one a little more. I hear people talking about the masks, that everyone should wear one when they go out. Tears float in my eyes thinking about the distress this would cause Owen if I even tried to walk around with a mask. I have to be the picture of mommy. I can’t change my looks without him going through many emotions or major meltdowns. Even certain foods in my mouth are a cause for an inspection of what I’m doing or a full screaming fest if I don’t show him what I’m eating, especially something like a hard candy or throat lozenges. So a mask would not go over well at all. I try to practice different scenarios with him because life happens when you have something else planned but he still needs to see the picture of me. It’s how he processes his world and others. And all I want to do is make it easier for him. I want him to know I’m here to help guide him through the twists and turns of life. I tell him I love him as many times as I can. Hoping to reassure him that even during these rocky times that nothing is routine for him I will still be with him. Through the challenges of the day always remember you are not alone and tomorrow there will be sunshine even after the rain. Find your strength and keep pushing forward. Smiles to all and donut daze!
Some days you think you are going along swimmingly and then you get screamed at, repeatedly. We had our happy screams, mad screams, because I walked out of the door screams, and the one that kept us the busiest the “school’s over” screams, followed closely by his teacher’s name and him rolling on the floor. Okay, so those two really break my heart into a million pieces. But hey, he tried Tikki Marsala tonight and loved it. I’m trying to look at the victories and not the heartache this is causing my child. He doesn’t understand this at all, how could he even begin to understand it. He cried for over an hour straight about no school, screamed the hour before that. And then went through the list of people and places he wanted to see and talk to. I held him for an hour, thinking he was asleep only for him to start all over again. What’s the solution, where’s the comfort for my son, how do I keep him growing and thriving. My heart aches for the other kids as well. The potty training feels moment by moment, but in other aspects, I feel like he is really growing. Over two and a half hours for him to fall asleep, him repeating “no school today” and “school’s over” consistently until his eyes finally closed for the night. I held him, sang to him, and tried to distract him. I asked him to count to twenty. He counted to two hundred twice. He counts to thirty perfectly and then for some reason he started counting using the eighties in every sequence. He will say, “forty three eighty four eighty five” going up to fifty and then do the same thing in the fifties. He always starts at eighty-four for each number until he reaches the nineties and then will say each number correctly to one hundred. He will keep going to two hundred doing all the numbers above forty the same way. As soon as he got to two hundred he started talking about school. I asked him to count to twenty again. He got all his numbers in. My tears fall, my heart breaks, but I will continue to rejoice our victories and try to find ways to keep moving us forward. In heartache remember there is hope and that tomorrow is a brand new day. Find your inspiration and motivation and make tomorrow matter. Smiles to all and donut daze!
“School’s over”, Owen said. Then he said it again. And again. And again. The screams came next and this was three o’clock in the morning. It takes a few moments to even realize what’s happening. He’s screaming and all I can think about is quiet, please. I realized what he was saying, what was happening, and I tried to move him forward. My heart aches for him. Every day I ask myself how do I explain the unexplainable. You don’t. I hold him tight and I tell him that I love him. I got him back to sleep only for him to wake up a few minutes later. There wasn’t much sleep after that. I tried to show him one of his teacher’s video. That made it worse. My heart ached worse. Randomly I try to talk to him about school and his teacher, but it’s the biggest stressor for him. He asks constantly about the coffee shop, bowling, church, gymnastics, and our friends and family, but school and his teacher send him into meltdowns. It’s where he wanted to go every day. He couldn’t wait to ride the bus and get to his teacher. And then it was snatched from him without warning. I have always tried to give him timeframes and explain to him when he was going to have a break from his routine, but this was instant, this was in the moment and no warning. This is life. The one thing I have always wanted for my baby were words. I wanted him to be able to not only have a vocabulary, but to truly understand the meaning behind the words. I think back again to the unexplainable and words aren’t even enough. My emotions are raw every day from all of this and I can talk them through with people. He can’t, he doesn’t always process what the words mean. And then I breathe. I tell him I love him and I try to make sure he understands we are a team. Today and always remember you are not alone. Our journey is about autism, but we’ve all got something. Keep pushing forward, take time for you, and find your inspiration to change the world. Smiles to all and donut daze!
I'm Lynn Browder. Owen's Mommy. The best moments in time are when I get to see the smile on his face and that giggle come from his heart.